The Total Life Learning curriculum was developed for students ages 3 to 22 who are blind, visually impaired including those students who have additional disabilities or are deafblind. The focus is on the development of life and career goals that enable student to maximize independence, self-determination, employability, and participation in the community.

It all began 25 years ago. I was a proud first-time mother, taking my newborn daughter to her very first appointment with a pediatrician. When Dr. “Smith” called me "Mom", I turned around thinking his mother must have entered the examining room. But he was talking to me. “Mom, how often are her feedings?” “Mom, how many hours is she sleeping?” I remember thinking . . . I respectfully call you Dr. Smith. Why are you calling me “Mom”?

Looking back, I wonder why I didn’t put a stop to it then and there. Perhaps I was shocked. I certainly didn’t want to be rude to a medical doctor and I was a little worried that if I corrected his conduct, he might become angry and (even if unintentionally) give my child poorer quality care. Needless to say, for this and other reasons, I did change to another pediatric practice. Being a mother to any child is sacred and should be respected. We work hard for this title and the only people who have the right to call us “Mom” are our children.

This pet peeve of mine continued with my third child, who is deaf-blind. Whenever I met with his school team, the educators and other professionals, referred to me as “mom.” As we sat around the table, they would say things like, “Mom is asking for this,” “Let’s ask Mom for that,” and “Mom says we need to do this, that, or the other.” Once again, I was not a unique person. I was “the mom.” I would think to myself, “I am sitting right here. Please don’t call me Mom. I have a name.” But again, I sat in silent agony, fearing that if I corrected the team members, it might result in backlash toward my child.

How we refer to each other matters. I sometimes worry that parents of children and youth with disabilities are viewed as being hypersensitive. But if you were to walk in our shoes, you would know the challenges we have faced and how hard we have to advocate on many issues. We strongly believe in what we are doing and just want respect.

Recently, I finally did it. After 25 years of pent-up frustration, I spoke up. Ironically, I did not say this about myself, but on behalf of another parent I was supporting. I told an educator, a professional, “Please, do not refer to the parent as 'mom',” and quickly explained why it was important. She understood immediately and agreed not to do this in the future--the sign of a true professional.

We, as parents, are serious about our children and youth, in both medical and educational arenas. We have worked hard to educate ourselves to be team players and partners with professionals. To us, interactions with educators and health care professionals are serious and professional. So please, don’t call me "Mom"!